The end can be sudden in advanced cancer

It was after shoveling winter snow that Brett began to cough. It was a dry cough, a morning cough, a “smoker’s cough.” It persisted, grew deeper. Several weeks later, there was a particularly harsh cough and in the sink was a crimson blob. Frightened, he called his doctor.

For 71 years old, Brett looked healthy. His lung exam was clear and the cough was gone. A case of bronchitis? The chest x-ray said otherwise. At the top of his left lung, almost touching his shoulder, was a white shadow. His doctor, now also worried, ordered a CT scan. The scan showed a solid mass, about 3 inches in size. Brett was referred to an oncologist.

A PET scan “lit up” brightly, as well as lymph nodes in the middle of his chest. The rest of his body was clear. A needle biopsy confirmed: Brett had lung cancer, and it was beginning to spread.

The thoracic surgeon could not operate. Brett started on several months of chemotherapy and radiation, which burned his throat, made it hard to swallow, so he lost weight. Toxic drugs sapped strength. Brett spent ten days in the hospital with a blood infection. He developed a clot in his left leg. Shingles erupted around his forehead, with needle-like pain deep into his left eye.

In May, Brett completed his planned therapy. A repeat PET scan showed that the tumor was no longer growing and, in fact, appeared to be dead. His blood counts recovered. The pain in his eye, improved, although he would need a corneal transplant. He gained weight. Brett was in complete remission; no evidence of active cancer at all.

That summer went well. The family took a trip to Maine. Brett ate well, although his endurance lagged. He was mildly short of breath, the result of lost lung tissue and radiation damage.

On Labor Day, Brett did a peculiar thing. He tried to barbecue hamburgers and hot dogs, without ever turning on the grill. He laughed at the raw meat. An MRI showed a two-inch mass in the front of his brain. Neurosurgery removed the lump. Brett was home in four days. Pathology showed that the lung cancer had spread, metastasized, to his brain.

To follow up the surgery, Brett received a brief course of radiation. CT scans of his body were performed. A growth was found in his right adrenal gland, and there was something vague in the left lobe of his liver. New chemotherapy was begun.

Through the fall and winter, Brett was treated with several different chemotherapies, but the disease grew. When a tumor threatened the spinal cord, he was given proton beam therapy. He got cyberknife to his brain, for another mass.

Brett became weaker, more short-of-breath, thinner. Mild confusion meant that he could not be left alone. Bone marrow suppression from treatment, and possible bleeding, mandated six blood transfusions. His kidneys began to fail. Everyone came to visit for the holidays.

In the middle of March, as fell a light snow, Brett collapsed at the kitchen table with a temperature was 103. The rescue squad could barely feel his pulse. He did not respond to shouted words, at all.

Brett moaned briefly as the nurses transferred his scarecrow thin body to the hospital bed. His head, bald, with sunken muddy eyes, lay to the side, as saliva gurgled in his throat and ran, red tinged, onto the white pillow. Brett’s veins were so frail that three attempts at sticking an IV through paper-thin skin failed. The resident inserted an IV into Brett’s neck. A pressurized mask was placed, but his breathing was so shallow, in brief, quick gasps, that oxygen levels remained critical. His blood pressure barely measured on the monitor. The catheter inserted into his bladder drained no urine.

Brett was in septic shock, his weakened system unable to contain a minor urinary infection. The admitting doctor knew that a patient with advanced cancer who ends up in an intensive care unit is unlikely to ever leave the hospital.

In a cheap molded plastic chair, the doctor sat in front of Brett’s family, white coat rumpled, a small stain of blood on the left sleeve, hands folded softly in his lap, hair a bit of a mess. He leaned forward.

“I am Doctor Goldstein. I have been taking care of Brett, since he arrived. He is very sick. We need to talk about what we are going to do. We have given him some fluids and oxygen, but he is very weak. I also put a call into his oncologist, and I will talk to him as soon as he calls back.”

Dr. Goldstein asked, “What do you understand, in general, is happening to him?”

“He was fine, last night. I helped him with his shower,” answered the son.

“I mean, what do you understand is happening to him about the cancer?”

“We know he has lung cancer. We know it’s not curable, but he has done everything. We are waiting for that new gene-drug to be approved. He has been home and doing pretty well the last week or two,” answered his daughter.

“He’s a fighter,” said his son. “He will do whatever it takes. Dad has been eating better. Last week I took him to the VFW for a beer.”

His wife sat silent. Dr. Goldstein asked her, “What do you understand is happening to him?”

She looked up, smiled weakly, “He has been though a lot. He spends a lot of time sleeping on the couch.”

It was quiet for a moment. An alarm beeped. A baby cried. Someone laughed. Dr. Goldstein said. “Brett is very sick today. He has an overwhelming infection. His blood pressure is very low, and he is not breathing well.”

“Where did the infection come from? Did he get it from the grandkids?”

“No, the infection is not the kind you catch. It comes from inside you, from your own gut, when you are very weak. It happens all the time to cancer patients.”

Dr. Goldstein continued. “Has Brett talked to you, have you talked about what he would want done if something terrible like this happened? Does he have an advanced directive or a living will?”

“I don’t understand,” responded the daughter. “Are you saying that he is dying?”

“I am saying that this is the kind of thing that happens to very sick patients. This is the kind of thing from which cancer patients die.”

“He is dying?” Responded the son, eyes wide, as he slumped back in his chair, hand over his mouth.

Dr. Goldstein spoke slowly, carefully. “Your Dad is very sick. It will require aggressive medical care to revive him. He will need lots of intravenous medications and will need to be put on a respirator machine to breath for him. Judging by his blood tests, he may need kidney dialysis. And, even then, he may never come off the machines. There is a very good chance that he will die, while he is in the hospital.”

“When … now?” exclaimed the daughter.

“During this hospitalization. In fact, if we do not do aggressive things now, today, he may die very quickly. He is very weak and, yes, the infection may be too much.”

“But, how is that possible?” gasped the son, now turning red, brows furrowed, leaning forward.

Physician Coaching by KevinMD

The end can be sudden in advanced cancer 17 comments

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Chiked

Not sure if this is a true story. If it is, my condolences to the family. However what is just as unfortunate and infuriating to me is why doctors still choose to tell people things like “the cancer is gone”, “no evidence of active cancer”. It is why we are losing the battle on cancer because the people on the forefront don’t get it. For goodness sake all you did the first time was remove a mass, a collection of cancer cells. There were probably a few hundred thousand to a million cancer cells still floating around in his body undetectable by current technology but just waiting for a chance to form another mass.

Why is that important? We know cancer cells thrive under certain conditions, sugar for instance. So if you are in remission or maybe you have passed the “five year” mark, don’t be fooled. Assume you still have an unknown number of cancer cells waiting if not begging for another chance to go crazy. If you go back to the same habits (bad food choices, stress, no sleep, environmental exposures), it will come back and most likely will be incurable. Doctors are doing their patients a disservice by telling them they are cancer free at any point.

Lisa

Habits do not cause cancer; I think the you can say is that some habits increase your risk for developing certain cancers.

No evidence of disease (or active cancer) seems to me to be a very good description of the situation for people who have been successfully treated for an early stage cancer. The situation is different for those with advanced cancer.

Cheryl Prevor Psy.D

I think that one of the reasons doctors will say “the cancer is gone” is because at that moment, based on testing, it is. Yes they likely should elaborate and advise that there is no way to fully assess if a cancer is completely eliminated but we have to acknowledge that a majority of people just want to hear that the cancer is gone. They don’t want to recognize that the treatment to make the cancer gone has likely causes terrible side effects & weakened their love one so that no matter what happens if they get sick they might not be able to survive that.

We are a narrowed society when it comes to cancer. We name the cancer. We devise plans to kill the cancer. But… It’s not always about killing a cancer. In fact few people actually die from cancer they die from the treatment & the steps taken to kill the cancer, ultimately weakening the body and killing them. There are amazing stories of people with cancer who choose not to take treatment. They enjoy their time on earth while here & then at the end choose medication for the pain.

If people looked more at how healthy someone is & what is their actual life span prognosis, I think the words “we killed the cancer” would take on far less significance.

Patient Kit

My ovarian cancer was found at the earliest stage and after successful surgery, my GYN oncologist’s words to me were gentle but firm: “There are no guarantees.” We decided not to do chemo because my odds were already so good that chemo would not make my odds any better and could cause me serious damage without increasing my chances of the cancer not recurring. I’ve seen him every 3 months for follow up monitoring for the first two years post-surgery and every 6 months now that I’m almost 3 years post-dx. I understand that there are no guarantees with cancer or with chemo. I’m living with that uncertainty just fine. There are no guarantees in life, period. At every benchmark of “success”, I kept expecting my doc to do a happy jig. I know that he is happy that I am doing so well but I guess that where there are no guarantees, there are no oncologists dancing happy jigs.

Suzi Q 38

A sad but good story.
I wish though, that doctors would be more direct.
Just me.

I was the bearer of bad news for my mother in law.
She loved to smoke, but sadly developed lung cancer at the age of 61.
We tried everything we could for her, but she lasted a mere 3 months.
Mets to the brain and throughout her body.

My 52 year old BIL died within two months of his pancreatic cancer with mets diagnosis.
Initially, all it was was a backache the doctor said. The general surgeon said that he could cure him with surgery, what a liar. I tried to get him to get to a cancer teaching hospital for a second opinion, but he believed the local surgeon.

I want my doctors to tell me, be straight with me.
I will tell my family and not hold back.

If need be and I am terminal, I will try one round of whatever.
If I feel I am going down fast, I will rest out my days at a beach house.
Everyone can enjoy the ocean with me and visit.

The hospital can wait.

Jewel Markess

My never-smoking mother died of lung cancer too though at 75. Terrible disease. She lasted two years, mainly because she had AML-ELK4 mutation and was part of a clinical study of crizotinib (it was still known but a combination of letters and numbers then) that helped significantly initially and then kept cancer from progressing for about 7 months when she got an infection. I’d imagine she’d have lasted longer and with better quality of life if her lungs had been in sightly better shape earlier – as is she had had packets of pleural effusion from early failed pleurodesis, and the infection of the pleural fluid which must’ve started earlier (long story). I should’ve taken her to the cancer center where she was in clinical trials early on, in hindsight, her quality of life could’ve been much better even if hadn’t made a difference time-wise. I’ll never know if she died of infection, blood clot, or a sudden progression of cancer, her cancer center doctor said later it could’ve been either. We took her to the local ER, and she didn’t want to be transferred to the cancer center, just said she’s had enough.

I agree with you on the rest of it.

Suzi Q 38

Jewel,
I am sorry for your loss.
You did the best you could with the information that you were given, the medical knowledge you had at the time, the treatment available, and what your mom wanted for herself.

I don’t blame her.

Jewel Markess

Thank you, and I am sorry for your loss.

Lisa

As I said, habits – the things you mentioned in parenthesis do not cause cancer. You can do everything right – eat well, manage stress, avoid environmental toxins and still get cancer.

No evidence of disease is means exactly what is says; scans and test can’t find any evidence of disease at the current time. It does not mean that the cancer won’t recur.

Chiked

I think we are on different planets on this topic.

Lisa

Environmental toxins increase your risk of developing cancer.

SarahJ89

Am I off base in wondering why on earth the patient’s oncologist would not have prepared the family for the way in which Brett was likely to die? If “this is what happens to cancer patients” why would the family not have known this??? Why would the oncologist leave the duty MD holding the bag like this?

I realize it’s possible this conversation might have happened. But, if so, it’s the sort of conversation that needs to be conducted more than once, perhaps many times. There should have some glimmer of recognition on the part of the family, some “oh yes, now I remember Dr. X mentioning this” instead of the total gob-smacked shock we see here.

Am I off base in my thinking? Because I really prefer to be prepared for what curve balls life throws at me, whenever possible. And in a situation like this, it is not only possible, it’s prudent and necessary. Failure to prepare a family for the circumstances likely to occur at death really jacks up the possibility of anger and negativity towards the doctor.

I’m hoping I merely missed something in the reading.

Cheryl Prevor Psy.D

I’m completely moved by this piece both in what it actually says & in the manner it is written so that nothing needs to be said.

I feel the response of the family is a completely fair representation of the naïveté and denial that people frequently have when a love one is seriously ill. I do feel though that this manner of thinking is also an active choice frequently fueled not by the actual patient’s desire to live but by the family’s own needs to have them survive. The piece is quite well written in terms of how the treating physician is trying to gauge the awareness of the family & even his struggle with being uncertain how to explain reality to the family.

Personally? While I think hope can be a glorious thing, it can be catastrophic for family members to be in denial & insist that their loved one will survive & get healthy again. It doesn’t prepare them for the loss and robs them of the ability to make fair decisions for quality of life issues. I went through this with my own family when my father got sick & ultimately died. I seemed to have a more realistic idea of his disease & while they seemed to be holding onto a delusion of cure, I mostly savored spending time with him just watching his favorite old movies & holding his hand. I think that inability to accept reality truly harms families in the long run. It seems to fill people with a combination of unecessary guilt & shame once the person dies as you have to look back at all the suffering to “get better” and see missed moments you can’t get back. It’s sad & frankly destructive but probably more common than not. I certainly was likely perceived as a buzz kill or even an outsider for being more accepting of his fate.

Really good article. Very moving (and triggering) for me. Thank you for writing it.

Jackie Aldridge

I think the average longevity after a diagnosis for a cancer that will kill is four months. So this person had more time than most. Unfortunately he didn’t have enough information to make decisions or to inform his family.

Lisa

Chiked, not everyone who smokes gets lung cancer. And not everyone who gets lung cancer smokes. Smoking increases one’s risk of getting lung cancer to a very high level; so if you want to say it is a cause that is fine.

The real thing I objected to about your statement is that you make it sound like one can avoid environmental toxins. I don’t think most of us can move to an absolutely pristine environment. A lot of what you said in you original post smacks of blame the patient, whose cancer recurs because of their ‘habits.’

Patient Kit

I think my GYN oncologist is awesome. He’s very skilled and also very communicative and compassionate. If my cancer does recur, I will not blame him. He took the time to really explain his reasoning to me after taking my case to the hospital’s tumor board to discuss with other doctors. He’s hospital-based at a teaching hospital/academic medical center in NYC. I am trying to live a healthy lifestyle. I get lots of regular exercise. As a New Yorker without a car, I walk and climb lots of stairs just getting from place to place. I swim laps at least 4x a week year round, in the ocean when it’s warm enough and at my local Y’s indoor pool. I’ve been a core member of this particular Y for 10 years. It’s my home away from home. I do other things their too but swimming is my addiction. I eat healthy. Lots of fruits and veggies, whole grains, lean proteins, etc. I’m no purist though. I haven’t given up anything completely, including sugar. But those things are occasional treats in moderate portions, not in the regular rotation. I sleep well. Unfortunately though, I have not been able to avoid extreme stress. I think I manage it fairly well though. If I do recur, I’m sure I will question whether I made the right decision about chemo. But the risk/benefit discussion I had with my doc made sense to me. It wasn’t a quick decision and I appreciate that he didn’t want to put me through chemo for “nothing”. Of course my type, grade and stage (1a) were all factors. I take my follow up monitoring very seriously. For a woman with ovarian cancer, I feel pretty blessed and lucky to be alive and thriving. Between living through 9/11 in NYC and then cancer years later, my main takeaway is that none of us know how long we have so I try to concentrate on enjoying life while I can, no matter what stressful bad stuff is going on.

Peggy Zuckerman

When anyone has a cancer that is obviously life-threatening in the near-ish term, the patient and family may not yet be able to hear that. Such a diagnosis is stunning, which makes is difficult to comprehend. And all the patient wants to hear or perhaps, can here, are words that disperse the threat. Too many surgeons are willing to say, “I got it all”, when the real description should be, “I got all that I could see. But cancers too small to be seen may already be growing.” From there, a plan for active surveillance or adjuvent treatment needs to be developed.

That is honest, puts some perspective on what a surgeon can do and has done, and is a reminder of the need for monitoring by multiple means. The reality is that “got it all” turns into a belief that nothing else need be done, that monitoring or further investigation is unnecessary. When doctors are more thorough and honest in their uncertainty, the patient is better served. That type of discussion needs to be started and re-started throughout the treatment and monitoring, which will serve all the parties better.